Bringing you Caregiving Stories from the CaregiverAsia Community

More than 5 million Americans are living with Alzheimer’s, which is the 6^th leading cause of death in the United States. In 2015, more than 15 million caregivers provided an estimated 18.1 billion hours of care for those who have this disease. Early detection can allow you to get the maximum benefit from available treatments, participate in decisions about your care and planning for your future and access care and support services for you and your family.

If you are concerned that you or a loved one is exhibiting symptoms of Alzheimer’s, it is important to make an appointment with your/your loved one’s primary care physician. There is no cure for Alzheimer’s disease, so the chief treatment goals are to:

• maintain quality of life
• maximize function in daily activities
• enhance cognition, mood and behavior
• foster a safe environment
• promote social engagement, as appropriate

One key decision you will need to make or help your loved one make, is whether care should be provided at home or in a healthcare facility. As making the appropriate health care decisions for a loved one with Alzheimer's is important.

Michele Lynn and her sister had to make that decision when their mother, now 99 years old, was diagnosed with dementia 10 years ago. Her mother spent a short period of time after diagnosis in her own home.

“Mom and my sister both lived in New Jersey at the time, and I was in Ohio,” Ms. Lynn said. “My mother is very strong-willed and had a great desire to be independent. My sister visited Mom every day and felt that as a retired person she should care for Mom herself. We talked about the responsibilities my sister would have. I emphasized that my sister would not have family support close by. She would be responsible for hiring and monitoring help. Caregiving for someone with Alzheimer’s is a 24/7 job. It would have been nice if we could have had a companion during the day to help with Mom, but ultimately, as the disease began to progress, we decided that it was in everyone’s best interest to find a good Alzheimer’s care facility.”

Ms. Lynn’s mother spent eight years in a small memory unit in New Jersey. 

“Then, my sister moved to Florida, and I found the right home for Mom in Ohio,” Ms. Lynn said. “I had full responsibility for selecting her residence. I was looking for somewhere that would offer peace and quiet; and cleanliness and the attitude of the staff were very important to me. At one place I visited, I heard members of the staff standing around, complaining; at another the floor in the dining area was filthy. The place I selected was beautiful and clean, and the attitudes of the staff were amazing.” 

All was well for the first year and a half that her mother lived in the memory unit at that facility, but then things changed.

“I had to get very demanding about training for the staff and how certain procedures were handled,” Ms. Lynn said. “My mother fell and was badly hurt, and I heard four different versions of what had happened. I also found out that men were trying to get into her room, seeking interaction. Mom was falling in the middle of the night. After installing an exterior lock on the door, the falls stopped. Other lapses in care occurred. I acted as an advocate not only for Mom but for other residents, too. All of the patients deserve respect and attention. Just because someone has dementia doesn’t mean they aren’t aware of what is going on around them.” 

Ms. Lynn emphasizes that just because your loved one is receiving professional care, that doesn’t mean they don’t still need you. 

“You have to be there and listen and pay attention,” she said. “You have to remember that you are trusting staff with a precious being who won’t be here forever. Advocate for your loved one to ensure they are safe. 

“Do the things your loved one likes to do. Do what you can to bring them joy. My mother loves flowers, so I bring flowers that we arrange together. She lights up. I also arrange for musical groups to sing for the residents. Music is a wonderful therapy for memory patients. 

"I've also never stopped finding outside help. Hospice has become involved as Mom has declined. They provide an extra set of eyes and ears for my mother. They also provide me much-needed support. It's important for me as a caregiver to get personal support."

Pamela Williams, now a registered nurse, previously worked as a nurses aide in an advanced Alzheimer’s unit at a long-term care facility and also cared for her grandmother at home after her Alzheimer’s diagnosis. She agrees with Ms. Lynn that a support system is so important when caring for someone with Alzheimer’s.

“We were fortunate because she was diagnosed pretty early,” Ms. Williams said. “She had a really great physician who put her on a couple of medications that really helped to slow the process. At first she mainly just needed help with medication management, laundry, cooking and cleaning. My parents lived right next door, and my aunt and uncle lived just a mile and a half away. One of my sisters and one of my cousins was still in town, so we had a great family support system. I moved in initially, and when I moved out my parents moved in with her, choosing her house over their own since hers was all one level and they knew that at some point, she wouldn’t be able to go up and down the stairs in their home.”

Eventually, her grandmother’s care needs increased.

“She began to need help with bathing and other personal care,” Ms. Williams said. “That is definitely something you need to consider if you plan to care for your loved one at home – that is a daily need, and a personal one. By then I was living a mile away and would drive over once a day to help my parents with her. I was a nurses aide at the time and was more comfortable with it. She was my grandmother, and I loved her and was happy to help.

“As her needs progressed, at times my parents would get stressed out and need a break. If you are a caregiver and you don’t have family and friends close by who are willing and able to offer respite care like we did, I think it is so important that you seek out other resources. Contact your Area Office on Aging or whatever resources your community has to offer.” 

Ms. Williams points out that care needs will change and increase over time, and it is important to be prepared for that.

“Know that even if symptoms are mild early on, they will get worse,” she said. “We were very lucky that my Grandma wasn’t aggressive, never got sundowner’s, never wandered, but I saw these symptoms in others at work. Some of the patients I cared for forgot how to walk, how to speak. Their care needs were extensive. New symptoms can present at any time, and that can change the course you need to take. There is no cure for this disease, so inevitably, there will come a time that you will either need to find a healthcare facility with an Alzheimer’s unit for your loved one or you will need resources to support you as a caregiver. Don’t wait for that to happen – research those options before you have a desperate need for them so you can take your time and make the right decisions for your family.” 

Living with Alzheimer’s – is more than just memory loss.

Following are 10 warning signs that you or a loved one might have Alzheimer’s: 

1. Memory loss that disrupts daily life
2. Challenges in planning or solving problems
3. Difficulty completing familiar tasks at home, at work or at leisure
4. Confusion with time or place
5. Trouble understanding visual images and spatial relationships
6. New problems with words in speaking or writing
7. Misplacing things and losing the ability to retrace steps
8. Decreased or poor judgment
9. Withdrawal from work or social activities
10. Changes in mood and personality

For more details on each of these symptoms, visit Alzheimer's Association's website.

How can you tell the difference between Alzheimer’s symptoms and typical age-related changes? The following chart from the Alzheimer’s Association can help:

There is a wealth of information available through the Alzheimer’s Association website, or by calling the association’s 24/7 Helpline at 1-800-272-3900. You can also jump right to a section of the website that will help you map out a personalized action plan for your family at https://www.alzheimersnavigator.org.

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